Feeding tube patients: What's your experience?

I have tonsils cancer. Already gone through 1st round of chemo and radiation. Completed it in January 24.
I have a port and that was a great thing. But it took me forever to cross that bridge. Once they told me it could be removed down the road and not permanent, I went all inn. I’m jumping back into treatment end of this month but I’m concerned about all the weight loss and trouble eating. I am leaning towards a feed tube to combat weight loss from the get go. Is that permanent? Or can it also be removed in the future. Does anyone know.

From the image you provided, the G-tube does appear to be somewhat deformed. It still appears to be patent. Is your husband still able to receive infusions through the tube? If so, what is the diameter of French (Fr) measurement of the tube?

It appears that the tube deformities apparent in your picture are consistent with repeated physical deformation of the tube, perhaps related to folding, pinching or kinking the tube or the use of a metal hemostat or clamp to stop outflow of infused fluids while switching between catheter tipped syringes or feeding bags.

Where and how often do you or your husband clamp the G-tube when you need to perform infusions? You should use a plastic hemostat to clamp off the tube as it will not damage or deform the soft tubing.

Of course it could be that the current tube inserted is defective but I doubt that they would place a defective tube.

If the tube continues to deteriorate becomes occluded or has reduced flow, it should be replaced.

pic included so you can see what I'm talking about.

What are people's experiences with nutrition for feeding tubes? How long does it take to adjust? When gastroesophageal cancer made it very difficult for my husband to swallow, he received a G tube. We've been using Kate Farms. One carton at a time through a gravity bag is OK, but he needs to have 5 a day to begin regaining weight, and when we up it to four cartons a day - divided into three feedings of 1 1/3 cartons each -- he begins to have diarrhea. Are there other formulas that are better tolerated? thank you so much. He's getting thinner and thinner.

This is all awesome, thank you. What should my husband do or who does he need to talk to about his tube connected to the stoma is all warpped looking? It looks like it has melted in some areas towards the top near the stoma.

Well, I'm glad that you seemed to have found an effective solution that works for you.

I've been battling Stage 4 squamous cell carcinoma for > 4 years. Due to total esophageal obstruction from radio therapy induced strictures, I had a G-tube placed over 2 years ago. It's literally been a life saver but far from problem free. I have them replaced every 3-4 months unless I have other issues arise. At times they have fallen out spontaneously, or have been pulled out when attached to overnight feedings. I am a retired doc so I at times I deal with the re-insetion of the G-tube myself. However, many people are not comfortable or capable doing this. I still make sure that a nurse or doc checks my repair efforts

That said, I have a few useful tips for dealing with G-tube issues that may arise when you don't have ready access to medical care.

With regard to your issues with your G-tube becoming dislodged, or falling out, it's often due to the deflation of the anchoring balloon that secures the tube's placement in your abdomen. Depending upon the make and width of your tube (French/gage/diameter) of the tube that is inserted, they will inflate the balloon with 5-10 ml of normal saline after insertion. Then they will gently pull back on the tube until they feel a bit of resistance. This lets them know that the balloon is properly inflated and they will then cinch down the external circular tab to snug the fit over the stoma.

At times, with normal physical activities the volume of the saline in the balloon may decrease and the tube is no longer secured internally. It may become dislodged and fall out. When this occurs, carefully clean the tube with sterile alcohol swabs or a 3% solution of hydrogen peroxide. Dry it and inspect it to be sure that there are no other obvious structural issues before attempting to reinsert the tube through your stoma. If you have it, use a bit of sterile lubricant on the end of the tube to help ease the reinsertion. After you've successfully reinserted the tube, you can re-inflate the anchoring balloon with 5-7 ml of sterile saline or distilled water using a luer lock syringe connected to the balloon infusion port. Your G-tube has 3 ports. A large center feeding port, a smaller drug infusion port below and to the side of the feeding port, and balloon port with a leur lock fitting opposite the drug infusion port.

Infuse your liquid drawn up in a luer lock syringe slowly through the balloon port to prevent balloon rupture. Once you've filled the balloon, gently pull back on the tube until you feel a bit of resistance. This indicates that you have successfully re-inflated the G-tube's anchoring balloon and it should remain in place. If the G-tube is damaged, irreversibly clogged or severely contaminated, you should not attempt to reinsert it.

Generally, you have a window of about 2 -3 hrs before your stoma will begin to close. If you are not able to access a healthcare facility facility in that time frame, you may be able to maintain your stoma's patency (keep it from closing up) by inserting a clean small diameter straw no larger than the diameter of your G-tube through the stoma. Sterilze the straw with 70% alcohol or 3% hydrogen peroxide and let it dry before insertion if you can. If you don't have alcohol or peroxide, it may be cleaned with fresh clean water or saline. Also, if you have it, use a bit of glycerin lube to coat the straw to ease the insertion of the straw. Many people also keep Foley catheters in their G-tube emergency kits which can be inserted in their stomas to keep them from closing up before they can get their G-tube replaced.

You should assemble a portable emergency G-tube kit equipped with these items and carry it with you when you travel to deal with any issues that may arise.

With regard to the care of your stoma to prevent irritation and infection, every 1-2 days you should visually inspect it and the area around it for signs of obvious infection, swelling or redness. You should gently clean the area around the stoma with either a Q-tip dipped in 70% isopropyl alcohol or a sterile alcohol swab. Its's normal to see a bit of discharge or leakage of gastric contents that may accumulate and form a crust around the tube where it is inserted through the stoma. After you've cleaned the area around the stoma, you should slip a a sterile split gauze pad between the plastic anchoring disc and the stoma. The gauze will cover and protect the stoma from irritation by the plastic cinching disc, absorb any discharges You should secure the gauze with several strips of tape to keep it in place. Your use of duct tape while effective, does not allow for free air exchange and may prove uncomfortable to remove by people with fragile or sensitive skin. I'd recommend Nexcare tape for sensitive skin.

As to dealing with clogs or blockages, you may infuse a little Coke or other cola into the tube with a cather tipped syringe. The carbonic acid in the Coke//cola may dissolve the clog within 10 - 60 minutes. You can attempt to provide a gentle push-pull with the syringe plunger to provide a bit of agitation to help clear the blockage.

If this is not successful after repeated attempts, you can use flexable plastic probes or a thin flexible wire probes (avaiailble on line) to dislodge or tunnel through the blockage. If either of these options fail to work and restore free flow of liquids, go to a health care facility as your tube may need to be replaced.

To prevent clogs and obstructions from forming, you should flush the G-tube several times daily with water. If you are using a pump for your feeding deliveries, you can set up a flush of at least 50-100 ml every 1-2 hrs to keep the tube clear of feedings buildup. Also, if you are using various pureed foods for your feedings you may consider a weekly cleaning with a dilute solution of papain (meat tenderizer). Simply prepare a dilute solution of the papain and infuse about 10-15 ml into the tube, clamp it at a point just above the entrance to the stoma and close the cap on the infusion port and let the solution sit for 15-60 min or longer. You can roll the tube between your fingers to help brake up any obvious clumps while the papain solution is digesting the material coating the inner wall of the G-tube. The solution should digest most of the protein film and build up that may have accumulated from pureed foods,

After 15-60 min, flush the tube with 50-100/ ml of water to clear the papain solution. Visually inspect the tube to see that it is clean. If not, repeat the process allowing the papain solution to work a bit longer. I've left it in to work overnight with no issues.

Also, if you are administering slurries of various medication pills, tablets, powders or supplements, you should flush your G-tube with at least 25 ml of water after every administration to prevent clogging.

I hope you found this information informative and- useful.

First of all, congratulations to your hubby. The reason, I believe, that the sight or smell of food, etc., that your husband was experiencing is because during this type of operation, the vagus nerve is severed—so you no longer feel full nor hungry.

Yes, our pump is detachable and rechargeable and he does have the backpack (although he hasn't chosen to use it yet). Formula overnight would be the best solution but it causes nausea. As I said, we break it up. Yes, the Boost is by mouth and it's worth 530 calories. He does take Ondansetron, as well as Prochlorperazine, both of which offer minimum relief of nausea.

After his first session with the hypnotherapist he had an entire yogurt by mouth (usually he'd have one spoonful and that would be it for him. He also ate about 80% of both a scrambled and one piece of bacon—all without nausea. I feel that we've finally turned a corner but it's going to be a while yet until we can talk about getting his tube removed.

Thank you for all your suggestions and congratulations and best of luck to your husband.